Number of posts: 18
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By Rosemary Griggs:
One of our favorite things to do in the evenings before dinner is to turn the music up, turn the stove down and dance in the kitchen. One of our dogs, Gary Dug, has some pretty good dance moves too and loves to dance with one paw on each of us. We call it a love fest. It had been a long time coming but we were so grateful to feel good again, to take back our joy that was put on hold by breast cancer – and to dance. Yes, yes.
My hair was growing back. I had new breasts. My chemo port was out. I was cancer free and training for an upcoming triathlon. I was a survivor, but I couldn’t help thinking back to the time when cancer was not part of my identity.
After my nipple grafts had healed it was time to choose the nipple color to be tattooed on. Since my newly reconstructed breasts, and all the surrounding area had no sensation, it was a painless procedure. I was warned by the Mayo’s tattoo technician that choosing a nipple color was tricky and could take a long time. Since I was an artist, we all had visions of me being there for hours getting the color just right. I took this drawing of The Thinker with me to the tattoo procedure. The plastic surgery staff got quite a laugh out of it and hung it up for other patients to see. As it turned out, the first color we chose worked out just fine and we were out of there in less than an hour.
The eighteen month long treatment phase had finally started to wind down after 16 rounds of chemo and 30 rounds of Herceptin. This was the final surgery that included constructing and grafting nipples, getting my chemo port removed and liposuctioning the excess fat that had migrated from my chest to my armpits (sounds sexy, doesn’t it). I was more than ready to get over this last surgery hurdle but dreaded another recovery time, which turned out to be minimal compared to some of the previous procedures. David Ray always lectured the doctors and nurses to take extra special care of me. They had heard it all before and were very kind to both of us, realizing how hard it was for him to see me rolled into surgery once again.
On a related note, though I had reached my deductible and was fully insured, my insurance carrier, using separate medical codes for the same surgery, paid 100% of the primary procedure, then 50% of the next and only 25% of the third procedure, although it was all done during the same surgery. The bill for the entire surgery was $18,395. Insurance paid only $2,814.50, although they still send me form letters saying that they comply with the federal Women’s Health and Cancer Rights Act of 1998 that requires insurance companies to pay for reconstructive surgeries related to breast cancer. My family will be paying well over $100,000 when it is all said and done. I do not fault the Mayo Clinic who has given me superb medical care. I fault the insurance company, who I won’t name, for continuing to deny and manipulate claims after we have paid into the benefit program for over 20 years. This ongoing struggle with the insurance industry has been one of the most exhausting and frustrating complications of the disease.
Our sweet dogs, Abbie and Gary Dug, suffered too. They knew I was sick and stayed real close. Friends would walk and feed them when we had to leave for long days at the Mayo Clinic. It was probably a good thing that the doctors didn’t tell me that the chemo was cumulative in my system. By the time the sixteen chemo treatments were done I was too weak to make it to the mailbox much less give the dogs a worthy walk. After the chemo was over and the side effects began to lessen one of the first things I looked forward to was walking my dogs.
The nurses at the Jacksonville Mayo Clinic were so caring, efficient and accommodating. They would try to give us a private room, an extra pillow and heated blankets so David Ray could rest beside me while I was getting my weekly treatments. We became friends and I still check in with them when I go for follow up visits. Some of the nurses were breast cancer survivors themselves. One nurse got diagnosed during my time there and we commiserated on mastectomies and reconstructive surgeries. When I finally completed my last chemo treatment they gave me a certificate with all their signatures and sweet notes of encouragement.
David Ray is such a balcony person. He finds the good in most people and most situations. I usually do too but during the toughest part of the chemo treatments, I went to the emotional basement. It was a dark place but there was always a light that we worked towards – getting through that next weekly treatment and counting down how many more doses until I could climb back out.
The chemo made me cold even though I started treatments in heat of mid August. The chemo-induced menopause gave me incredible stinging hot flashes. The chills and the sweats came back to back. I’d put my hat and coat on and as soon as I got situated I’d be ripping it back off in a full sweat. And then I’d be freezing the next minute. Pulling clothes on and off was a full time job and the most exercise I had for about eight months.
We named David Ray the positive spin monkey because he could put the spin on just about anything and make it sound bearable. In the beginning, he said that I surely wasn’t a candidate for breast cancer, and then I was. After the first biopsy he said, “Okay so it’s only a centimeter. A lumpectomy, some radiation and you’re good to go.” Then after more tests and biopsies, it changed to 10 centimeters and two different types of invasive cancer and he said “Okay, so they want to take both breasts, let’s do it and you’ll never have to worry about it showing up in the other breast.” And then when it became apparent that I was going to have to have aggressive chemo and Herceptin treatments, he said “Great, that drops the odds of it ever coming back into the single digits.” He’d say “So you lost your hair, now I get to see what your beautiful head looks like.” He spun a gentle circle of protection around me that got me through some of the darkest times, even though he was so scared himself.
Food, gifts, cards, free oil changes, handmade hats, scarves and socks, massages, house cleaning, dog walking, crystals, teddy bears and so much love and caring came our way. I did feel like the amazing cancer girl. Now that I’m feeling good again, I think it’s my duty to show all the people who cared for me that their hard work paid off. I’m alive. I feel good. I’m happy and well.
I felt like hell and didn’t have the energy or desire to see anybody much less celebrate my 46th birthday but then I realized that some women with breast cancer don’t get to have another birthday. I decided it was better to have a birthday than not.
I felt like everything that made me recognizable to myself was being stripped away. I couldn’t work, exercise, garden, laugh much or make love (much). My thick curly hair was gone. My breasts – gone. I spent hours sitting in the big red chair we moved to the kitchen. And then I just lay on the futon, with cats draped all over me and stared out the window at the bird feeders and the empty garden and my lonely studio.
Shy Cancer Girl
Shy cancer girl can’t hardly leave the yard
Shy cancer girl – she just gets so dang tard
Shy cancer girl – she’s still got big hair
But this time next week ain’t none gon’ be there
Shy cancer girl really wants to see her man
And watch him groove with his house rockin’ band
But shy cancer girl could run into dire snares
Trying to get up those rickety ass bar room stairs
Shy cancer girl – her port is still sore and she’s still got stitches
She don’t want to be groped on by them drunk bar room bitches
Plus shy cancer girl – she don’t want none to stare
At the empty place where her big titties once was there
Shy cancer girl can’t hardly leave the yard
Shy cancer girl – she just gets so dang tard
(As for the bar room bitches, you know who you are and that I love you.
I only used the B word because it rhymed.)
After having seen my father fight and succumb to bladder cancer in his early fifties, getting cancer was my number one fear. Going through chemo ran a close second. When we realized that I not only had to have a double mastectomy but also an aggressive chemotherapy regimen, David Ray once again pulled me back from pit of despair by convincing me that since we were going to be together for all of our days why not trade one year for the next forty.
I wish that I had taken pictures of my breasts before they were removed. It was the strangest thing to wake up and have them gone. It’s been more than three years but I can still feel where the nipples were. When I drink something cold or touch the air a couple inches out from my chest, a little lower than the reconstructed ones, I feel that familiar nipple tingle. I don’t think about them all the time now but sometimes I still miss my breasts.
A Stroll Down Mammary Lane
Stuffed my shirt with Kleenex
And begged for a bra at eleven
Got a training bra at twelve
In college entered two wet t-shirt contests
Walked naked in the desert
Swam naked in the Satilla
Nursed my daughter for two years
Until she weaned me.
Grew from a B-cup to a C,
Sometimes a D
Wore two bras at the same time
to keep them still when I ran
David Ray called my nipples “number twos”
Like a number two pencil eraser
I’ve liked these big ole’ titties
But now they’ve got to go
Bruised and bleary eyed after a double biopsy with two doctors, two nurses, another trip to the MRI machine, Adavan to keep me from hauling ass of out of there and one nurse to rub my back and whisper sweet nothings. It was our seventh wedding anniversary.
After the realization that I was going to loose my breasts, I continued to cry for another month and was mad and confused that it happened in spite of my mostly organic diet, diligent exercise routine, minimal amount of vices and no family history. I felt like my body turned on me. I had been so healthy and now there was a dark, nasty horror growing inside of me. At first I spent a lot of time and energy questioning how and why I got cancer.